Covid Trial Results

So today there’s been some news on the BBC about Covid trials for the Pfizer vaccine, initially suggesting that it isn’t as effective in cancer patients, and specifically in blood cancer patients. It particularly suggests that the long gap between first and second vaccines puts those of us with blood cancer at a greater risk as its protection reduced from 13% at 3 weeks (rubbish!) to only 8% at 5 weeks (even more rubbish!). It was effectively saying, that the fact that I’ve already been 6 weeks since my first vaccine, could result in no greater protection from my second jab. And that I may only have an 8% chance of protection.

Now, I’m very clear that this is only a very small study, meaning that not only were there not many people involved, there weren’t that many with cancer, and even less with blood cancer. I’m also clear that this study was regarding Pfizer and not the Astra-Zenica vaccine which I had. However, it is a worrying outcome that leaves many of us blood cancer patients concerned about how the future looks.

I have already been in touch with my GP, local covid centre and consultant to try and get fast tracked for that second dose, but in reality, that could be a false use of time and energy if it doesn’t improve the rate of protection. What blood cancer patients really need now, post first vaccines, is access to the antibody tests by someone that they can trust to give them the results. I need to know whether I am lucky enough to be in that 8% and therefore more able to get out into the world for the first time in 12 months, or whether I’m in the 92% that isn’t protected.

But it doesn’t really stop there does it? If I’m in the 8%, what is the plan. There is no way that we can realistically continue to shield me from life, especially with 2 children at secondary school, in the middle of their GCSE’s. They have given up huge amounts in the past 12 months, without complaint (most of the time 😳). They have missed out on seeing friends, going to school clubs and socialising, when their peers have been able to. They have missed out on us having people over, or socialising in the ways others have, because we’ve had to be super careful about everything. But there was always an end point. And we had always hoped that when everyone else was safe, we would be too.

There is no way, whatever the outcome of these results, that we can/ will continue to shield like we have. As I say, we wouldn’t feel it was fair or healthy for our children to take that view – they need to be able to be teenagers. They need their lives back. And if I’m honest, it’s not just them. I can’t keep doing this for much longer either. I love seeing people and I miss it so much. I made the decision near the beginning that I needed to find a way to deal with that so that I wasn’t miserable (and I hope I was successful most of the time), but I honestly think it would have a massive effect on my mental health if I couldn’t get out there this summer while everyone else was returning to some form of normality. Just imagine how you would feel if you were only able live in your home and garden (and we’re lucky to have a garden) while others were socialising, going to the pub, meeting around you for UK holidays and get togethers. It’s been hard enough when it’s been for short times in and around lockdowns, but it’ll be even harder if and when that lockdown is over.

I want to go on our short break that we have booked in August. I want to do my London to Paris bike ride in September. I want to be able to eat in a pub garden (nope, I don’t want to go inside yet!). I want to be able to visit a garden centre without worrying. I want to pop to the shops without having to ask someone else. And to be honest, I need to do most of those things too, if I’m going to stay sane.

But it goes further than me and the kids. What do we do about Nick’s work? He will be expected back in London in the next few months which means the train & tube and the high chance of transmission there. If I’m not protected, do we just take that chance? In which case, there’s no point in being careful about anything, and we might as well have not shielded for the last year. Or does he have to reconsider a role that he has to travel for, albeit it only 2 days a week. He so deserves the promotion that he has just received and it would be terrible to have to reconsider that. And I don’t think I’d let him.

So what is the answer? I really don’t know. I think that antibody tests being available (even if they’re charged at cost), is the starting point. But if it’s true what they say about the vaccine not being effective for those of us with blood cancer, then we need one to be developed, and fast. Because my life is as important as anyone else’s. Because I do have a role to play in society. Because I do contribute.

I’m sick of the people who say we aren’t as valuable. I look after my children making it possible for my husband to work in the job he does (and contribute to taxes), I work myself (I will be looking to return to community fundraising as soon as my L2P is over), I fundraise large amounts for charity, and I contribute to local groups like my netball club. But even if I didn’t, my life is important I hope, not just to me, but to my family and friends.

I would also call out to everyone I know to have the vaccine if you can. While people like me aren’t safe despite our best intentions, if everyone around us has the vaccine, the chances of transmission become lower and lower. I know you might worry about the side effects, or you might worry about drugs in your body. I know you might not trust that it’s a necessary process. But please, if any of this has made you think, I’d ask you to reconsider your decision.

I’ve ranted far more than I planned to in this post. Perhaps unsurprisingly it means more to me than I first thought. I hope desperately that we’ll get some clarification about this study very soon and that it will allow us a little bit more hope. Today, it feels to me like the rug has been pulled from under my feet at the last moment.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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